Preventing bowel cancer: A personal story

"If I had known about preventive options back then, maybe it would not have gone so far."

My life changed a lot when I got bowel cancer. That was six years ago. When I was diagnosed with bowel cancer I was 45 years old. But I am not angry with fate any more for getting this disease. Today I have the feeling that I am strong and have more strength than I ever had before. This experience of possible death was at first very shocking, but in the end it is a very salutary experience.

If I had known about preventive options back then, maybe it would not have gone so far. My grandmother died of bowel cancer at 64. My mother was 52, and my aunt was 37 years old. It was obvious that bowel cancer ran in our family. But nobody warned me about this danger. And if I hadn't got sick myself, who knows what would have happened to my daughter and my sister. I knew absolutely nothing about preventive measures.

I just woke up one morning and wanted to go to work as usual. But then I suddenly had enormous bleeding. I was afraid and went to the doctor. Within two days I was in hospital and I didn't know if I would ever come home again.

Because so many people in my family died of bowel cancer, I thought I would only have a few weeks to live when I got the diagnosis. I couldn't quite grasp it, at first, that I could survive. I was really lucky, because I was treated by very good doctors.

Just before I got sick I had been on holidays. I had a wonderful holiday and I was feeling really great. I never thought that cancer would happen to me. I didn't feel anything at all. I didn't have any pain, no weight loss and no problems with bowel movements. If the tumour had not started to bleed, then it might only have been found later.

When I got back home I had to do something. I couldn't just wait and think I could have no influence, and just had to see whether it went well or not. I went to the bookshop and got every book on cancer, to read and learn as much as I could about it. That is when I learned about a clinic that did genetic tests to see if cancer was inherited. Then I had the test and made a family tree. It was established that I had HNPCC, hereditary non-polyposis colorectal cancer.

After my stay in hospital I went to a rehabilitation spa. While I was there, I became aware that I had to do more. I could not just be satisfied that the cancer had been removed and that took care of everything. I wanted to do something to make sure the cancer did not come back. While I was there I was told about the doctor who treats me now. That was the best thing that could have happened to me.

I have been going regularly for a colonoscopy every year. The colonoscopy is not painful at all. It is no big deal. You do not have to be afraid of it.

I get a lot of exercise and have a healthy diet. I make sure that I do things that give me a lot of enjoyment. I have joined a really nice gym. When I exercise there for two hours and then go into the sauna and whirlpool, then I just feel good, body and soul. So now I go three times a week. Quality of life is very important to me. In the last five years I have had one cold and nothing else. My immune system is very solid. I think I have been symptom-free because I do all these things.

I also try to do things that just do me good. When I came out of the hospital I went to an animal shelter and got myself a dog. I always wanted to have a dog. He is the best therapy for me that I can think of. If things aren't going well for me, then I grab the dog and go for a walk with him through the woods and fields. And I take my music too and then I feel better.

The genetic aspect is the worst of the whole disease. I love my daughter more than anything else. The thought that I could have passed a defective gene to her is a real burden for me. My daughter has to start having regular annual colonoscopies in five years. I still do not know if she has inherited it.

I tried to talk to my daughter about this, because it could have a big impact on her later life if she has inherited this condition. Whether it is the choice of partner or the decision on whether or not to have children. If I had known then, I would have decided against having a child. I am really happy with my daughter and I love her more than anything else, but if I had known .... My daughter said that she does not want to know if she has inherited the gene. I can understand that. But on the other hand, then she might find out that she does not have it. So she has to live with the uncertainty. That is a very delicate thing. My sister said straight away that she wanted to find out.

My sister and I go together for colonoscopies. She experienced exactly the same thing in our family as I did, and she has to go for a colonoscopy every year too. Bowel cancer is a type of cancer that can be treated well if it is found early.

I want to live my life today in the way that is best for me. It is not that I don't consider the wishes of my family or my friends, but I live with more awareness and more intensely. I try not to orientate my life towards the future. Instead I live for today. I do not make longterm plans. It used to be completely different. Actually I am very happy with my life. I would like it to stay the way it is.


ACKNOWLEDGEMENT

These real-life stories were gathered during interviews with patients who generously shared their experiences with us. We are very grateful to these interview partners. All of them have given their permission for these stories to be published here.

The opinions and comments in these stories are the opinions of individuals. They are not necessarily shared by IQWiG and are not intended to serve as recommendations to help people make decisions.

© IQWiG (Institute for Quality and Efficiency in Health Care)